Changing face of HIV in black communities over 30 years

When the first case of AIDS was reported on June 5, 1981, AIDS was described as a disease of white gay men. Among the terms experts considered naming this new disease, GRID — gay-related immune deficiency — is commonly recalled. Now, 30 years later, the face of HIV and AIDS very much includes black America — with men who have sex with men and heterosexual women most affected.

Contrary to early perceptions, black Americans were always significantly affected by the HIV epidemic from the early days. By the end of 1981, almost 20 percent of all reported AIDS cases were among African-Americans who, at the time, only made up 13 percent of the population, according to the CDC.

However, the false perception that the epidemic did not include blacks may have fueled the changing face of HIV. This “white gay man’s disease” shifted in 1990, when the number of new HIV diagnoses among black Americans exceeded the number of new diagnoses among whites. This trend continued until the present.

According to Dr. Kevin Fenton, head of the HIV center of the CDC, the difference lies in the gay community’s quick and vocal response to the crisis. The community rallied and preventative campaigns were disseminated. Yet, the black community and its leaders were relatively silent, giving the impression that HIV was not a problem.

Starting with choreographer Alvin Ailey in 1989, several high-profile celebrities revealed their HIV-positive statuses, including Magic Johnson in 1991 and professional tennis start Arthur Ashe in 1992. This became pivotal in the community starting to rally together.

The very faith and religious constructs that served as the backbone of many black communities served as a hindrance to HIV outreach. Instead of the strong vocal presence that gay AIDS activists used, churches refused to speak openly about sexual health or sexually transmitted diseases. There was a heavy stigma about HIV, and accepting the epidemic meant accepting homosexuality, unprotected premarital sex and intravenous drug use. The biggest concern was the belief that HIV was a death sentence.

“People would say, ‘If I have HIV, I don’t want to know,’” says Dr. Fenton. “There were issues related to who actually gets HIV, and what does that say about that individual or that community.”

However, the truth was that even black women who had only one or two partners in their lifetimes were contracting HIV, since the rates were, and continue to be, so high in the black community.

Early efforts were still successful — the number of new diagnoses of HIV remains high but has maintained at a stable level. Black Americans have the highest rate of HIV testing and condom use of all ethnic groups. And black Americans are reported to have more knowledge of HIV and the ways it is transmitted than other ethnic groups.

But, the disparity remains.

Over the last 30 years, more than 200,000 black Americans with AIDS have died. It is the third leading cause of death among black men and women ages 35 to 44.

Despite the fact that blacks represent 14 percent of the U.S. population, they account for almost half of people living with HIV in the U.S. and nearly half of new infections each year.

One in 16 black men will be diagnosed with HIV during his lifetime, as well as one in 32 black women. Black women are also far more affected by HIV than women of other races — 15 times more likely than white women. Forty one percent of all new HIV infections in black Americans are among black gay and bisexual men.Even with these alarming statistics, the sense of fear and urgency surrounding HIV and AIDS has lessened over the three decades — and the perception has changed faces. According to the CDC, studies show that many Americans, including those in the African-American community, underestimate their personal risk for infection, or believe HIV is no longer a serious health threat.

Today’s teens and young adults are too young to remember the sense of panic in the early 1980s when researchers and clinicians found a link between the strange forms of pneumonia and cancer in gay men in California and New York. These diseases were typically seen in people with poor immune systems, and experts finally discovered that one disease — later called AIDS — explained them both. However, little was known about it at first.

Everyone from grade school children to older adults were inundated with information and campaigns about how to protect themselves from AIDS — no anal sex, using condoms, decreasing the number of sexual partners — across every possible educational platform.

“It’s time to tell your kids about the birds and the bees and AIDS,” said one poster.

“If you get the AIDS virus now, you and your license could expire at the same time,” read another.

“AIDS is a white man’s disease: Famous Last Words,” from a poster directed at black Americans who continued to deny its existence among their communities.

It took three years to identify human immunodeficiency virus, or HIV, as the cause of AIDS, and more information was ultimately garnered. It became apparent at that time that HIV was transmitted not just through homosexual intercourse, but also through heterosexual sex, blood transfusions, intravenous drug use and from infected mothers to their newborns during birth.

Researchers later uncovered that it took almost a decade for HIV to progress into AIDS, which means HIV was being spread for years prior to the discovery of AIDS in 1981.

In that first decade, there was much anxiety, many myths about transmission, and much fear of contracting the disease.

Now, almost 30 years later, HIV and AIDS remains a leading cause of death, yet the number of Americans who still hear about AIDS has dropped considerably. Among black Americans, it fell from 83 percent to 65 percent over just five years.

Likewise, in 1995, 56 percent of black Americans named HIV and AIDS the most urgent health problem facing the nation, now only 22 percent does.

Dr. Fenton says the reason is clear: “It is no longer seen as a death sentence.”

He believes the scare tactics of the 1980s are no longer effective today. Now that we have effective treatments, more knowledge of the disease, and approaches to keep it under control, people no longer see people around them dying with HIV anymore.

The other changing face of this epidemic is, in fact, rooted in the outward appearance of those living with HIV. In the early 1980s, the images shown across the country were those of thin, frail white men with skin lesions indicative of a cancer, Kaposi’s sarcoma. Now, it is not uncommon to see obese grandmothers living full, active lives while on their daily HIV medications.

For years, HIV-positive patients had complicated drug regimens with restrictions as to the times of day the pills could be taken. Now, many people take only one pill a day, with all of the medicine they need. It is still not a cure, and must be taken for the rest of their lives, but it improves the quality of life and reduces transmission to others. Some people who regularly take their medications have undetectable levels of HIV in their blood.

Dr. Fenton applauds this change as a victory for antiretroviral treatments. Yet, he reinforces the message not to make assumptions about people.

“This is the myth: ‘Oh that person looks really healthy, there is no way that she could be HIV-infected,’” Fenton says. “We now know that 30 years into the epidemic, you can’t make assumptions. If people don’t know their status, get tested.”

Nearly 100,000 black Americans living with HIV are unaware that they are infected.

While stigmas and homophobia continue to keep many black Americans from seeking HIV testing or treatment, other factors currently contribute. The risk of contracting HIV from a partner increases if either person also has another sexually transmitted infection. And, black Americans have more sexually transmitted infections than other groups.

With higher rates of unemployment and poverty, access to HIV testing may not be readily available. Many community health centers that once provided outreach and free testing have lost funding with the economic downturn.

The decrease in black men in the community due to incarceration and death lessens the number of available partners for females and may impact sexual risk.

However, there are successes. Efforts to date have prevented 350,000 infections and helped to save $125 billion in treatment costs.

Strives over the past 30 years include a decrease in the rates of HIV among babies born to HIV-infected mothers, intravenous drug users — likely due to needle exchange programs — and heterosexuals overall.

In July 2010, President Obama launched the National HIV/AIDS Strategy — the first-ever blueprint for fighting the HIV epidemic, focusing on African-Americans and other vulnerable populations.

Moving forward, experts have recently concluded that male circumcision reduces transmission of HIV. An HIV vaccine is still in the works. And, microbicides that women can place inside of the vagina before or after sexual intercourse may now include HIV medications to prevention transmission.

Dr. Fenton hopes these exciting new findings will continue to decrease the rate of infections among all black Americans — and looks forward to the next, brighter face of HIV in black America.